Another long update that took a few days to write.  A lot happened in the last few days and the consent meeting was a lot of information.  I’ll do my best to summarize, but there will likely be amendments.

Tuesday, 11/6: Bone Marrow Aspirate
Praise God, the aspirate on Tuesday went without any complications or issues.  Jeremy was required to fast, but he didn’t complain about it once.  We told him the night before and the day of that we would need to go to the hospital.  He tried to comfort himself by saying very matter-of-factly, “No pokes.”  Unfortunately, we had to tell him that he was going to get pokes, but he wouldn’t feel them.  He comforted himself with this news by saying, “It’s ok to cry.”  And we reassured him by telling him that, “Yes, it’s ok to cry.”  He was a champ through the entire thing.  Prior to sedation, he was just quietly watching the doctors and nurses prep everything that they needed for the procedure.  When the sedative went in (it’s administered through his central line), he just put his head on Alice’s shoulder and fell asleep.  As great as Jeremy was through the entire thing, that feeling of our child going limp in our arms, in all honesty, is really awful.  I don’t think we’ll ever get used to that.

Also, before the aspirate, Jeremy had a clinic appointment where the doctor looked him over and listened to his lungs.  Praise God, they sounded clear, so the doctor wasn’t too concerned about anything.

I called to follow up on the results of Jeremy’s aspirate and praise the Lord, his MRD is zero! He is still in remission!

Wednesday, 11/7: Echocardiogram
The echo on Wednesday went well, too.  Praise God for how He’s prepared Jeremy for all these tests and procedures.  He was very still through the entire echocardiogram – a half hour long examination.  We got the results in the consent meeting on Thursday and we were told that his heart is looking fantastic.  Praise the Lord for continuing to protect Jeremy’s heart.

Thursday, 11/8: BMT Consent Meeting
We heard a bit more about Jeremy’s donor during Thursday’s consent meeting. The donor is male and in his 30’s. Everything appears to be moving forward according to the schedule laid out by the doctors and Jeremy’s admission date will stay at 11/18.

The consent meeting was what we expected.  A run down of the chemotherapy he’ll be getting to prepare him for bone marrow transplant along with it’s risks and side effects.  Then a description of transplant itself and the risks and side effects associated with that.

For the chemo, it’ll be a 10 day regimen of busulfan, fludarabine, and ATG.  And it’s going to be intense.  Much more intense than the chemo he’s received for the last 3 months.  The purpose of the chemo is to wipe out any residual leukemia cells and to completely destroy his bone marrow to prepare him for transplant.  The list of side effects is similar to the previous rounds of chemo.  The less severe and likely being mucositis (mouth sores and sores up and down the GI tract), vomiting, diarrhea.  The more severe and less likely being lung, liver, kidney, pancreatic damage.  The doctors expect mucositis and the resulting loss of appetite and eventually total parenteral nutrition (TPN, basically IV nutrition).  We are praying that Jeremy will not lose his appetite and will be able to eat and drink and maintain his weight.  And we continue to pray that God would have His hands of protection over Jeremy’s organs and every part of his body.  The doctor asked if Jeremy needed to be in IV nutrition during his last rounds of chemo and when we told him no, he said, “That’s amazing.”  God is indeed amazing – sustaining and strengthening Jeremy through the last three rounds of chemo.  I don’t have any statistical data, but I suspect that it is rare for a patient undergoing chemotherapy to gain weight, which is what Jeremy did in the last round.

Then there’s the transplant.  The transplant itself looks just like a blood transfusion, so there’s no surgical procedure or anything.  Because the donor is mismatched (9/10) and unrelated, there’s a slightly increased risk of graft rejection and graft vs. host disease (GVHD).  But, there’s also a slight increase in the beneficial graft vs. leukemia (GVL) effect.

Graft rejection is bad.  In the case of graft rejection, they will need to rescue immediately by using Alice’s stem cells and proceeding with a haplo transplant.

The GVL is beneficial and is slightly increased in Jeremy’s case because his donor is mismatched at 9/10.  The donor’s immune system will see the leukemia cells as foreign and destroy them.  This is not immediate and will hopefully happen over time.  And I’m not 100% on this, but a patient cannot benefit from the GVL effect without experiencing GVHD.

GVHD is basically exactly what it sounds like.  The graft (donor bone marrow) can attack the host (Jeremy) because the donor’s immune system does not recognize Jeremy’s organs and tissue.  The first three months post transplant, he will be monitored for acute GVHD.  Past that time, he will be monitored for chronic GVHD.  Jeremy is at an increased risk for GVHD because his donor is an unrelated, mismatched donor.  GHVD isn’t a single disease.  It is a classification of several potential complications involving his skin, liver, stomach, and/or intestines.  GVHD can range from mild and treatable to severe and fatal.  Jeremy will be given a number of medications to reduce the severity of as much GVHD as possible, but the doctors have pretty much guaranteed us that he will experience some level of GVHD and the only thing that can be done is to wait to see how severe it will be so it can be adequately treated.

In all honesty, we’re scared.  Very scared.  I saw a line in one of the many sheets of paper we were given during the consent meeting regarding the rare possibility of a patient’s death as a result of this treatment.  It’s a difficult pill to swallow – to trade a life threatening disease for a life threatening cure for our dear son.  First, there’s the chemo which will completely wipe out his immune system so there is fear of dangerous infections that can further threaten Jeremy’s life.  Then, there’s the GVHD which is expected if there is to be any beneficial GVL.  We pray hard that Jeremy will come out of this unscathed.

And at the same time, we often wonder if we are foolish for being scared.  God is amazing and we’ve seen with our own eyes how He sustained Jeremy through all this – from the very beginning with his diagnosis all the way through to his three rounds of chemo.  And we’ve experienced His sustaining hand carrying us through as well.  We are broken, exhausted, and weak, not a day having gone by where one of us hasn’t wept.  We’ve lost all confidence in ourselves.  Any strength or confidence that remains can only come from almighty God because we are completely tapped out.  Praise God for His strength, that in Him we have full confidence and assurance of His promises of eternal hope.

“Ask it will be given to you; seek and you will find; knock and the door will be opened to you.  For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.  Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!” (Matthew 7:7-11)

Praise God:

• for Him, for Christ, our means of eternal hope
• Jeremy continues to be in remission
• Jeremy’s heart continues to be in good condition
• Jeremy’s lungs are clear and the sneezing and runny nose don’t appear to be a cause of concern
• Jeremy remains fever free and continues to eat well